549 - Perspectives on palliative care integration in pediatric nephrology among parents of children with chronic kidney disease: a cross-sectional survey

Publication Number: 4537.549

Taylor R. House, University of Wisconsin School of Medicine and Public Health, Madison, WI, United States; Makayla Thomas, University of Wisconsin School of Medicine and Public Health, Madison, WI, United States; Aaron Wightman, University of Washington School of Medicine, Seattle, WA, United States; Ryan Coller, University of Wisconsin School of Medicine and Public Health, Madison, WI, United States

Background: Integrating palliative care (PC) can ease the burdens of pediatric chronic kidney disease (CKD) and help children and families flourish, yet it remains underutilized. A key barrier is nephrologists’ concerns about family perceptions of PC. Among comparable populations - children on dialysis and children with cancer - parents are often unfamiliar with, but open to receiving, PC.

Objective: We sought to describe parental perspectives on incorporating PC into pediatric nephrology care.

Design/Methods: We conducted a paper-based, cross-sectional survey among parents of children with CKD stages 3-5 at a single quaternary care pediatric center. The survey was adapted from a validated tool with input from an advisory board and pretested through cognitive interviews. Survey questions evaluated PC needs, experiences, and attitudes toward integration. All items were optional. Data were summarized descriptively.

Results: Thirty-eight parents participated (50% response). Parents were predominantly White (86%) mothers (95%) average age 40 years (SD=9 years), with half (51%) holding a bachelor’s degree or higher and with households having a gross annual income >$100,000 (53%). Most parents (71%) were familiar with PC. While over 1/3 of this group (36%) believed PC to only be indicated when death is imminent, just one (4%) held a negative view of PC. After being provided with a definition of PC, 81% of all parents indicated that the PC team’s role in end-of-life care did not impact their willingness for their child to receive PC. In fact, 87% of parents thought it would be a good addition to their child’s care. Parents’ perceived benefits of PC centered on enhanced family support (82% indicating benefit), as well as symptom management and decision-making (76% indicating benefit). Parents primarily recommended PC integration at the time of dialysis initiation and kidney transplant.

Conclusion(s): In this group of mostly well-resourced White mothers, familiarity with and willingness to receive PC was high. Given these findings, family apprehension should be a rare barrier to PC utilization among children with CKD, and nephrology teams should be equipped to educate parents about PC’s longitudinal application across the disease trajectory. Future interventions should target dialysis initiation and kidney transplant as key points for PC integration.